Ideas and Collaborations

Working together and sharing expertise, experiences and energy creates the most from research - and inspiring collaboration is a major aim of the network.

On this page we will post ideas for research and collaboration from members of the community with a view to securing input, partners and/or support from others. It may be people don't respond in large numbers but any input and offer of help can make a massive difference so please do engage.

An example of how the community has come together to develop evidence which may support people with MS is provided below.

If you want to post an idea for a research project please email us at the address below. It would be great, if it is possible, if you could provide the following:

A summary of the research idea and what you think the benefits will be.
What partners/input you are looking for to help develop or deliver the idea.
How people can best get in contact with you should they be interested.
What funding you might need and whether you have this secured.

We look forward to hearing from you and trying to help!

Ideas and Collaboration for research – A Case Study

An example of where engagement across the local MS community has led to research taking place is the work exploring the breadth of impact of Fampridine.

Fampridine is a treatment that has been approved for use by NHS Wales and NHS Scotland for the improvement of walking in adults with MS who have an EDSS between 4 and 7. It is not currently available on the NHS in England or Northern Ireland but in the South West, people with MS have been campaigning to try and change that.

People with MS receiving care under the Plymouth service have been able to use Fampridine through a scheme which gave initial free use of the treatment prior to purchasing on a self-funded basis. As a result, a number of individuals experienced the benefits of Fampridine, which go beyond improvement of walking.

The Plymouth Multiple Sclerosis and Health Measurement group, led by Professor Jeremy Hobart, was keen to research the impact of Fampridine to see if this generated evidence to support its MS community in the creation of a case for change. The group instigated an initial service evaluation, which identified consistent benefits across multiple symptom domains. This pilot data was then used to successfully seek funding for a full research study to capture the range and impact of clinical benefits of Fampridine for people with MS.

Working in conjunction with Swansea Bay University Health Board, as a centre able to prescribe the drug via the NHS, the study has interviewed people with MS prior to, and after, commencing Fampridine. The study assesses the impact of MS on each individual prior to their treatment across all symptom domains, then assesses the symptoms that have benefited from the use of Fampridine. This helps determine the overall and specific benefits to the individual of taking Fampridine and its potential cost effectiveness.

The results will be shared early in 2023 and the Plymouth MS team will work with those interested to use the data to support the MS community in its aims to secure provision of Fampridine via the NHS in the South West.

If you have an idea for how research could have a positive impact for people with MS then do get in touch.

Changing the Game: Evaluating the Real World and Cost-Effectiveness of Fampridine in Multiple Sclerosis has been funded by Biogen, Inc. The sponsor is the University of Plymouth, and the study is supported by the NIHR Clinical Research Network South West Peninsula.

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